Doctors are writing lots of prescriptions for drugs to calm the behavior of people with Alzheimer's disease and other types of dementia, but non-drug approaches work better and carry far fewer risks, according to a new paper.  

In contrast to current protocol non-drug approaches should be the first choice for treating dementia patients' common symptoms such as irritability, agitation, depression, anxiety, sleep problems, aggression, apathy and delusions, write a team in British Medical Journal after reviewing two decades' worth of research on antipsychotics, antidepressants and non-drug approaches that help caregivers address behavioral issues in dementia patients. 

They lay out their findings along with a framework that doctors and caregivers can use to make the most of what's already known. Called DICE for Describe, Investigate, Evaluate, and Create, the framework tailors approaches to each person with dementia, and as symptoms change.

The components of the DICE approach are:

D: Describe - Asking the caregiver, and the person with dementia if possible, to describe the "who, what, when and where" of situations where problem behaviors occur and the physical and social context for them. Caregivers could take notes about the situations that led to behavior issues, to share with health professionals during visits.

I: Investigate - Having the health provider look into all the aspects of the person's health, dementia symptoms, current medications and sleep habits, that might be combining with physical, social and caregiver-related factors to produce the behavior.

C: Create - Working together, the patient's caregiver and health providers develop a plan to prevent and respond to behavioral issues in the person with dementia, including everything from enhancing the patient's activities and environment, to educating and supporting the caregiver.

E: Evaluate - Giving the provider responsibility for assessing how well the plan is being followed and how it's working, or what might need to be changed.

"The evidence for non-pharmaceutical approaches to the behavior problems often seen in dementia is better than the evidence for antipsychotics, and far better than for other classes of medication," says first author Helen C. Kales, M.D., head of the U-M Program for Positive Aging at the University of Michigan Health System and investigator at the VA Center for Clinical Management Research. "The issue and the challenge is that our health care system has not incentivized training in alternatives to drug use, and there is little to no reimbursement for caregiver-based methods."

Coincidentally, a new U.S. Government Accountability Office published the same day as the BMJ paper addresses the issue of overuse of antipsychotic medication for the behavior problems often seen in dementia. It finds that one-third of older adults with dementia who had long-term nursing home stays in 2012 were prescribed an antipsychotic medication -- and that about 14 percent of those outside nursing homes were prescribed an antipsychotic that same year.

The GAO calls on the federal government to work to reduce use of these drugs further than it's already doing, by addressing use in dementia patients outside nursing homes.

Kales, however, cautions that penalizing doctors for prescribing antipsychotic drugs to these patients could backfire, if caregiver-based non-drug approaches aren't encouraged.

She and her colleagues from Johns Hopkins, Laura N. Gitlin PhD and Constantine Lyketsos MD, note in their paper that "there needs to be a shift of resources from paying for psychoactive drugs and emergency room and hospital stays to adopting a more proactive approach."

But they also write, "drugs still have their place, especially for the management of acute situations where the safety of the person with dementia or family caregiver may be at risk." For instance, antidepressants make sense for dementia patients with severe depression, and antipsychotic drugs should be used when patients have psychosis or aggression that could lead them to harm themselves or others. But these uses should be closely monitored and ended as soon as possible.

The authors lay out five non-pharmacologic categories to start with based on their review of the medical evidence. These approaches have been shown to help reduce behavior issues:

  • Providing education for the caregiver
  • Enhancing effective communication between the caregiver and the person with dementia
  • Creating meaningful activities for the person with dementia
  • Simplifying tasks and establishing structured routines
  • Ensuring safety and simplifying and enhancing the environment around the patient, whether in the home or the nursing/assisted living setting

They also note that many "hidden" medical issues in dementia patients - such as urinary tract infection and other infections, constipation, dehydration and pain - can lead to behavioral issues, as can drug interactions. So physicians should look to assess and address these wherever possible.

Kales, Gitlin and Lyketsos are working with the U-M Center for Health Communications Research to launch a National Institute of Nursing Research-sponsored clinical trial this spring that will test the DICE approach through a computer based tool for caregivers called the WeCareAdvisor. The tool will help families identify tips and resources in a single computer interface to address behavioral symptoms. The tips are designed to prevent or mitigate possible triggers for common behavioral symptoms such as pacing, repetitive questioning, restlessness, or shadowing.

For instance, de-cluttering the environment, using music or simple activities that help to engage a person with dementia , or using a calm voice instead of being confrontational, could help greatly to reduce behavioral symptoms, Kales says. And making sure that caregivers get breaks from their responsibilities and take care of themselves, especially in the home, can help them avoid burnout and taking their frustration out on patients.

"Behavior-based strategies may take longer than prescriptions," acknowledges Kales, a member of the U-M Institute for Healthcare Policy and Innovation. "But if you teach people the principles behind DICE, the approach becomes more natural and part of one's routine. It can be very empowering for caregivers or nursing home staff."

More research on both new drug options and the best ways to assess and address behavioral symptoms is needed, the authors conclude. But in the meantime, the evidence to date comes down in favor of non-drug approaches in most cases.

Citation: BMJ 2015; 350 doi: Funding: National Institutes of Health, NR014200, Johns Hopkins Alzheimer's Disease Research Center (P50AG005146).